Unspoken expectations and situational participation: a qualitative study exploring the instantiation of next of kin involvement within the trust model

Abstract

Abstract Background Demographic changes, such as an increase in older adults, present a challenge to the healthcare service’s current capacity. Moreover, the need for healthcare personnel is rising, while the availability of labour is dwindling, leading to a potential workforce shortage. To address some of these challenges, enhanced collaboration between home-based healthcare frontline workers, service users, and next of kin is a necessity. The trust model is an organisational model where home-based healthcare services are organised into smaller interdisciplinary teams aiming to tailor the services in collaboration with service-users and their next of kin’. This study explores how the next of kin and frontline workers perceive and perform involvement in making decisions regarding tailoring the services for the users of home-based healthcare services organised after the trust model. Methods Four in-depth interviews and 32 observations were conducted, and thematic analysis was employed to identify meaningful patterns across the datasets. Results The results are presented as two themes: (i) unspoken expectations and (ii) situational participation. The results highlight the complex nature of next-of-kin involvement and shared decision making, raising questions about meeting expectations, evaluating available resources, and developing sustainable involvement processes. Conclusion This study indicates that despite of an interdisciplinary organisational model aiming for shared decision making as the trust model, the involvement of next of kin continues to be a challenge for frontline workers in home-based healthcare services. It also points to the importance of transparent communication and how it is deemed essential for clarifying implicit expectations.